3 Mar 2015

In Saturday's Guardian was an short piece called "What I'm really thinking: the grandmother of an autistic child" in which a woman describes an outing with her 7 year old grandson Jimmy. Obviously we need to have some insight into the difficulties this causes her because that's the standard narrative for any and all articles on autism which centre on a family member and not autistic people themselves. So Grandma describes how "the red-faced Jimmy who is almost out of control" is "screaming and lunging violently at the locked doors" of some public toilets.

Later when Jimmy has settled Grandma discloses that she "like[s] to imagine" that they look normal and admits that few of her friends know that she has an autistic grandson in case they offer what she describes as "well-meaning but inappropriate advice" such as a book recommendation by an autistic author. "It breaks my heart because I know that Jimmy, even with the best help in the world, will never be able to read or write or lead a “normal” life."

I have not bothered to comment on a Guardian article for a few years but I wanted to reach out to this woman. I swallowed my distaste for the assumptions and probably unexamined attitudes regarding disabled lives and the potential to learn and develop. So doing my best to be considerate and temperate, I left a comment:

"If your friend's advice is to read books by autistic authors, then it is both well meaning and appropriate. Also, you cannot possibly know that Jimmy, aged only 7, will never be able to read or what kind of life he will lead. Your love and the time you spend with him coupled with good education and natural progression will help him live up to his potential. Take heart!"

The most helpful thing to me in knowing how best to help my son has been listening to people who know what it's like to be autistic. Dismissing advice to read autistic writers is to my mind, ill-considered. Also it bothers me to read comments of the "my child will never" variety and we've all seen them numerous times in autism discussions. Sparrow Rose Jones wrote about the damage such statements can do:

"So . . . what is it that you are actually saying when you look at my life and say that I am not like your child?
In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change."

My autistic son will be 15 this year. I can't possibly list all the skills and knowledge he has amassed since he was 7 and like all of us, he will continue to learn and progress throughout his life.

(A couple of detractors took issue with my comment, but they showed so little insight and understanding that their views are beneath my regard.)

And lo! the template it doth predict the story most accurately as we learn that the "usually smiley and playful" child "wasn't making eye contact with anyone and didn't appear to be taking in anything going on around him. It was like someone had flicked a switch in his head" and he "had begun to withdraw into his own, self-contained universe".

Step 6: Mum struggles to get anyone to take her concerns seriously. Her husband might think she's worrying about nothing and that no child of his could possibly be anything less than perfect. All the doctors she encounters are callous and all the other professionals are harsh and unhelpful. Eventually one special therapist or teacher (but not a medic) comes along who understands and for the first time, really listens.

Step 7: After much effort and heartache, Mum is devastated to learn that the explanation for all the child's problems is this terrible curse known as Autism.

The NHS would fail him:

"Left in the hands of the NHS, she points out, Konstantin would so far have had little more than speech and music therapy, ‘neither of which would be giving him the skills that he needs to survive and have a life of dignity. Children on the autistic spectrum need to be taught how to fit into society, and the real cruelty comes from neglecting to do that.’"

My autistic son has never had any form of ABA(TM) and yet he is living a life of dignity. Nor is it cruel to ask that society accepts neurological diversity. And here comes the devastation:

"a developmental paediatrician confirmed what she had not wanted to admit, even silently to herself – her son was indeed on the autistic spectrum. ‘I felt as though my heart was being ripped out,’ Tanja recalls. ‘My mother was with me, thank goodness, and as we left the hospital, I was physically sick. I am a fighter by nature but in those darkest hours I definitely became unhinged.'"

Step 8: Just so we know how hard their lives are, how terrible this Autism thing is, several examples of the child's terrible behaviour are described, the tantrums and self-harm, the strange humming and abnormal interest in trains. This makes the book "gritty" and "unflinching" in the newspaper book reviews and is generally thought of as a good thing.

This child is so very young that Step 9 detailing tales of violence is missing but his strange otherworldly behaviours are outlined:

"his speech regressed and he no longer responded readily to his name", and "in the weeks leading up to [the child's] diagnosis he had begun to walk on tiptoe and repeatedly pull his hair. He also opened and closed doors incessantly and became obsessed by pushing buttons on electronic toys."

Someone cure that child stat!

Step 10: The warrior phase commences. Mum finds out stuff the doctors don't know, or didn't want her to know. She arms herself with superior knowledge, garnered from a motley crew of brave mavericks or comes up with some self directed plan, and goes medieval on the autism.Step 11: Mum is a lone crusader, challenging authority and staying strong and calm in the face of what to ordinary mortals would be insurmountable obstacles. But Mum reveals the real terror she felt, the depression and anxiety, the tears and sleepless nights, all due to the autism which has seized her child and holds him or her hostage.

"[Mum's] quiet confidence is centred on the conviction that, while there is no ‘cure’ for autism, she is providing the next best thing for Konstantin – a radical, tough-love therapy known as Applied Behaviour Analysis (ABA)."

"However as she began to seek help, Tanja also realised that she was facing an uphill struggle. In the US, ABA is tried and tested – successive studies have shown that half of children given full-time ABA tuition early enough start school and many need no further therapy at all. The other half make significant progress, too, reducing their need for special needs support. ABA is endorsed by the American Medical Association and in the majority of US states health insurance companies are mandated to cover ABA therapy. But in the UK, the National Institute for Health and Care Excellence has yet to provide ABA as an option for the treatment of autism. Its official line is that it cannot recommend ABA because a review has found no evidence to support it."

It is true that NICE, after a thorough investigation of the claims and the actual evidence decided not to recommend ABA. But another claim in this paragraph needs to be countered: there is NO evidence whatsoever that 50% of children who receive early and intense ABA ever become "indistinguishable from their peers" (whatever that means). That is an utter fabrication based on a poorly written study from way back in *1987* which combined 40 hours of intense therapy with harsh punishments. Do ethics matter? As I have written before, why are standards so very low when it comes to autism?

And another point to make, when lauding Lovaas as a pioneer, bear in mind that he first trialled his ABA as a gay/trans conversion therapy.Step 12: The intervention phase commences. The child gets older and matures, hopefully with lots of love and good education as well. But the intervention is credited with effecting a miraculous cure.Step 13: The story ends by recalling just how far they have all come and how it would never have been possible without x,y or z (ABA, the companionship of a Golden Retriever or certain biomedical treatments). The child is said to be normal or recovered, as measured by a place in the Valhalla of this type of autism parent - mainstream school.

So this child, aged just three years old, is undergoing seven hours of ABA tuition, five days a week. Instead of calling social services the Daily Mail asks that we donate to her charity so that yet more little autistic kids will be subjected to the same. "‘He is using every ounce of his brain to do the work and, by the end of the day, he is exhausted,’ says Tanja."
I do not admire or condone this.

But lets see how if the template still holds:

"'...the transformation has been astounding.’ Before starting ABA, Konstantin had become so unsettled, he was incapable of sitting still to eat, read or watch TV. ‘If you took a toy away from him, he’d scream for an hour, and when he woke at night, he howled the house down,’ says Tanja. ‘Within a week of starting therapy, he was making eye contact and engaging again, and within a couple of weeks he was toilet trained, which I had begun to think would never happen.’ Eighteen months on, he is content and compliant and plays happily with his sister"

The child is only three years old! How much of this can be attributed to ABA and how much to natural progression? My son is 14 and can do all sorts of things he couldn't manage when he was 2! Also, I strongly oppose any treatment that has "compliance" as a goal. Too many disabled people have suffered as a consequence of early compliance training.

I have decided though that my template though needs another step:

Step 14: pay now or pay later!
This step is exemplified in the following horrible paragraph:

"ABA is undeniably expensive. A full programme, whether carried out at home or in one of the handful of ABA schools in the UK, requires intensive teaching for up to 40 hours a week, 49 weeks of the year, and costs £45,000 annually, ‘which sounds a lot, but it is less than the £150,000 to £200,000 a year costs of residential care for young autistic adults once they become too big and aggressive to live at home,’ Tanja points out. (A recent study by the London School of Economics and Political Science estimated that autism costs Britain £32 billion a year, more than heart disease, strokes and cancer combined – making it the nation’s costliest medical condition.)"

"Too big and aggressive to live at home"! What a revolting statement. This sort of argument is particularly galling. There will be a high cost to provide appropriate lifetime support structures for some autistic people, and so what? Early ABA for all will not change that. People are entitled to the help they need as citizens whether they have a disability or not. The UN Convention on the Rights of Persons with Disabilities points of the problems of "putting a price tag on the basic human rights for a significant segment of the population".
Furthermore, "it is actually good economics to ensure that disabled persons are able to live up to their potential. When there are no obstacles in their way, disabled persons are employees, entrepreneurs, consumers and taxpayers, along with everybody else."

The article ends:

"For Tanja, life may no longer be whimsical and carefree, but it has resounding purpose. ‘I believe there is a reason why Konstantin was given to me,’ she says. ‘He is the most sweet-natured and loving boy and he is living proof of what can be achieved. If he can deal with the challenges of autism, then so can I. So every day, we carry on and we count our blessings.’"

Life has purpose for all of us. Being mother of a disabled kid makes you no more special or worthy than anyone else. I count my blessings everyday too. I just wish that the sort of autism-mum story exemplified by this article would no longer be given a platform. It's beyond time to amplify the voices of the real autism experts, the people who are themselves autistic.

About this Blog

Curious, enthusiastic and affectionate mother of 3, one of whom is perfectly autistic, I find great joy in each of my children and strive to help them learn and grow in an atmosphere of love and acceptance of their differences, difficulties and strengths.

The children's pseudonyms reflect my autistic son's one time love of all things Thomas the Tank Engine.

This is my personal blog so all posts and opinions shared are my own and not those of my employer.